An Open Letter to School District Administration Personnel

Dear School District Administration Personnel,

Let me start this by stating that I understand that you have a difficult job.  There are few of you and many students with many different issues.  I understand there are certain rules in place to help things flow smoothly and that, at times, you follow as though they are written in stone.  But even stone must change with time.

I recently went through the IEP process with my daughter who is 3.  She lives with Sensory Integration Dysfunction (or disorder, if you prefer).  Diagnosed at 15 months and in therapy since she was 13 months old, she has come a long way but still has a long way to go.

During the course of evaluations and subsequent reports, the evaluators did their best to put together a “snapshot” of my child and her needs.  Regrettably, it fell short.  When we came to the IEP meeting, all the districts specialists who had been in contact with my daughter were there and were prepared, as I was, to put together an education plan to help my daughter succeed.    Unfortunately, I felt that they chose to ignore or brush aside their most valuable asset when it came to my child’s needs.  Me.

Yes, I know my child better than anyone.  I have spent countless hours working with her at home and in therapy.  I am constantly inventing new ways to work with her and to help her learn to cope with the world around her.  I have held her as she cried for no apparent reason and cheered her many tries and accomplishments as she has grown.  I have guided her through her ups and downs and gave her the words and tools she needed to learn, cope, and grow.

I am her mother, but I am also her best and only advocate.  I will not sit meekly by and accept that someone else, based on a snapshot report, can accurately know my child.  Even her therapists that have been working with her for almost 2 years now ask for and listen to my input.

I will not be brushed aside in favor of one size fits all rules and guidelines.  We are all different, some more so than others.  My daughter may be speech impaired, but it is because of motor planning difficulties which are a result of the sensory dysfunction which impacts her interactions with the rest of the world around her, including her peers.  It is time to look at the whole child, not just the parts.

My daughter has a right to a free and appropriate public education and I will not let you handicap her by ignoring her needs and rights under IDEA.

Yes, I am angry.  Yes, I feel stone-walled, ignored, and brushed aside.  But I will not allow it to continue.  I know I am not the only one out there who feels marginalized by the system.  Maybe no one else has, but I am and I will continue to stand up and make my voice heard.

Sincerely,

An Active, Involved, and Concerned Parent

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School Districts, IEPs, Stress, & Peanut Butter Toast

Yep, I’m at it again with my bizarre connections.  Don’t worry, it will all become clear sooner or later.

A lasted only a few weeks in her pre-k class before it became glaringly apparent that she was not in the most appropriate setting for her needs.  She was becoming so stressed out at school that she began regressing at an alarming rate.  My sweet little girl was no longer making eye contact, threw tantrums at the drop of a hat, and refused to eat.  I gave it time, but when she started refusing the Pediasure I knew I couldn’t wait around any more.

I went the normal route of speaking to the teacher, who informed me that another staff member had questioned my daughter being in the class given the nature of her needs and that she, herself, was not comfortable handling some of A’s issues.

Before I go further I do want to clarify one major point.  I do not in any way, shape, or form blame the classroom teacher.  A’s teacher is a wonderful teacher/SLP who handles her class beautifully and is very good at what she does.  Unfortunately, she was not set up or trained to handle a child like mine.  Too often teachers take the blame when, in reality, the fault lies higher up the chain of command.  Now off the soapbox and back to where we were.

A few phone calls and in person chats later I felt completely stone-walled.  For some reason the higher ups in the district seemed to feel that their “snapshot” of my child gave them more knowledge than me and therefore they were better equipped to judge what was best for my daughter.

Yes, this would be where the stress part comes in.  Trying to get these folks to understand that even though my child was not a screaming wreck at school she was having issues.  After all, she came home every day she was there with a bloody lip and fingers from picking.  A didn’t feel safe enough to fall apart in the room so instead, she would withdraw, shut down, and pick (or bite) her lip until it was bloody.  Somehow, that never got noticed, even when I pointed it out.  Finally, after two weeks of rattling cages I think I am finally beginning to get somewhere.  I think what finally got through was when I pulled her from the class and explained to the principal and assistant principal in person, and over the phone to the district, was that A was not in a safe environment and I could not sit by and wait for them to do something.  Her needs were not being met and as her mother and her best advocate I was going to make sure that someone listened and took the necessary steps to correct the situation.

Oddly enough, it seemed to work.  We are now in “negotiations” with the district and hopefully a resolution will soon follow.  For now, they want to place her as an itinerant student.  Basically, that means that I will take her to the school a couple of days each week for her speech and PT .  This will allow the district to re-open her IEP and amend it to reflect any necessary accommodations that A would require to be successful within the classroom setting.  Of course, that could take the next 3 months, but it’s a step in the right direction and people are finally listening so I’ll take it!

Through these past two weeks, I’ve been working hard to get A back to where she was before all of this.  Happily, within one week of being home full-time again, her eye contact returned and the tantrums diminished (much to her brother’s relief I might add).  She is still struggling with food but is back to drinking the Pediasure so she’s at least getting something in her.  Thankfully, an answer to the eternal question (at least for this household), “What solid, with a decent calorie count, will you eat?” popped up tonight in the form of peanut butter toast.

Yes, good old, plain and simple peanut butter toast won the what will you eat for dinner lottery.  In fact, it was such a big winner that she ate almost 2 whole pieces along with her 3oz of yogurt, Pediasure, lemonade, and a cookie.  I suppose I should have thought of it sooner since she’s eaten it before, but it had fallen out of rotation during one of her brief regressions and I forgot all about it.

Then again…given how much peanut butter toast I ate when I was pregnant maybe it shouldn’t be that much of a surprise that she does really like it.  Oh well, we’ll never know.  I’m just glad she ate a decent amount today and seems to be doing better.   At this rate I might just get to try out a few new recipes I’ve found before the summer heat gets here and really kills my urge to cook and bake.  Guess I’d better freeze some of those homemade chocolate graham crackers (http://weelicious.com/2012/04/09/chocolate-graham-crackers/)before that happens!